You have many studies today that will offer thank you cards or that will have a special gathering at the end of the study, but it is not enough. A large percentage of patients, roughly 80 percent of patients in clinical trials, will say that they would like to know the value of the contribution they made. They want to know whether it made any contribution to knowledge in medical science. And yet 79 percent of all volunteers who have completed enrolment never hear from the site again."
Often the patient directs their concern to the PI or the study coordinator. These individuals have their hands tied as well, especially when it is an industry-funded study. The investigator has no additional knowledge, so there is a gap when the volunteer wants to know about their contributions and the research staff cannot provide the information.
Asian countries have also started facing challenges in recruitment and retention of patients. This is a time of considerable change in clinical research. It is getting more difficult to recruit patients for many reasons.
- About 65-70 percent of the patients in Asian countries live in rural areas where hospital infrastructure does not support clinical research
- Low awareness of opportunities to participate in clinical trials
- An ageing population that takes drugs for multiple chronic conditions, which makes them ineligible for most trial protocols
- Public concern over safety of new medications in the wake of major drug recalls
- Use of herbal medicines
- Scepticism about trials designed only to expand the market for a drug to include an additional condition
- Concentration of trials at academic medical centers that are out of geographic reach of many Asians sites
- Delayed start-up, inadequate planning, insufficient effort and staff, high expectations, lack of willingness to go against personal physician and insurance or cost problems
- An industry that focuses on trial protocol without a strategy for how to fill the trial
- The lack of economic incentive for physicians to refer patients to trials or to conduct trials themselves
- Widespread fatigue and resignation among professionals that the difficult recruiting situation cannot be resolved without major overhaul of healthcare
- The financing system that few believe is realistic